The last week has been good: been seeing my mates who are down from uni, saw my godson-to-be and been catching up with old friends :) It was also my little brother's 18th, which is weird! We went out for a nice meal with the family and he went clubbing (I was the taxi service for the night for him lol). Socially, it's been a fun week :D
I went to see Paul the physio and all he said was to keep up with the exercises :/ so nothing exciting there lol. My chest is still getting worse and I'm coughing more and feeling tired sooner. Thankfully, it's still going at a slow pace, hopefully it'll be OK until my next hosp appointment, which is mid May. I'm trying to squeeze as much in as a can before I have to go into hospital or do home IV's again, then I won't feel like I am missing out as much haha :P
I would have pics to put up but I think my sister has my camera somewhere so they will have to wait lol, lovess xxx
Tuesday, 24 April 2012
Monday, 16 April 2012
A week of fun!
This past week, I've been overly enjoying being able to breathe! Been going out to pubs and clubs like a normal person with my friends :) My chest is starting to decline, but thankfully it's going slowly and I'm trying to keep it under control by doing my physiotherapy more often and making sure I don't miss any nebs.
If it's not one thing, it's another with my body and at the moment it my knees! I've got CF related arthritis in my right knee and both my ankles; I hardly ever notice it, unless the seasons are changing from winter to spring or summer to autumn- I think it's triggered by the change in weather. Also in my right knee, I've had a problem with my knee cap since I stopped doing sports. I used to do gymnastics, horse riding and cheerleading but had to stop suddenly when I became unwell. Since then, my knee pops out of the socket a lot and I have to keep popping it back in :/ so I started seeing a physio person about it and he gave me exercises and said that if it doesn't improve, I might need a little op to make sure it doesn't get worse. So on Weds, I've got another appointment with him to discuss whether I'll be having the little op. Here's a pic of my knee at the moment, it swells a lot, which makes it hard to walk on. It's not painful, but if you try to bend or straighten it, there is a lot of resistance and you feel that your body doesn't want you to move it.
Finally, to help me exercise more, I've started roller blading again hahaa :P It was so much fun when I was little and apparently it's really good for you :) having not done it in years, I need some practice...
If it's not one thing, it's another with my body and at the moment it my knees! I've got CF related arthritis in my right knee and both my ankles; I hardly ever notice it, unless the seasons are changing from winter to spring or summer to autumn- I think it's triggered by the change in weather. Also in my right knee, I've had a problem with my knee cap since I stopped doing sports. I used to do gymnastics, horse riding and cheerleading but had to stop suddenly when I became unwell. Since then, my knee pops out of the socket a lot and I have to keep popping it back in :/ so I started seeing a physio person about it and he gave me exercises and said that if it doesn't improve, I might need a little op to make sure it doesn't get worse. So on Weds, I've got another appointment with him to discuss whether I'll be having the little op. Here's a pic of my knee at the moment, it swells a lot, which makes it hard to walk on. It's not painful, but if you try to bend or straighten it, there is a lot of resistance and you feel that your body doesn't want you to move it.
Finally, to help me exercise more, I've started roller blading again hahaa :P It was so much fun when I was little and apparently it's really good for you :) having not done it in years, I need some practice...
Thursday, 5 April 2012
AMAZING lung function!!!!!!!
On Monday I had the BEST news ever! I had come to the end of my IV course on Meropenum so I went back to the hospital to have a check up, my final flush of my port and the needle taken out. The results I had were out of this world! From last week's 64% and 93% for lung function, they had increased to 83% and 106%!!!!!!!!!!!!!!!!!!!!!!!!!! EEEEEEEEKKKKKK!!!!!! They haven't been that good in over 3 years! I was completely shocked and so happy because it means that my lungs are still working well and the 20% of lung capacity I thought I'd lost to CF because of scarring, I haven't! Now I've just gotta keep it that good :)
Also, my oxygen levels (measures how much O2 your blood carries due to your breathing) is up to 99%, which again is the highest it's been in years! Andddd I managed to put on 1kg in a week! I've never had such a positive hospital appointment and I just hope I can keep up with these amazing results! :D
This week I've had a fun week thanks to my health being great :) I've been puppy-sitting for my friend, gone out for a mate's birthday and had my cousin's fancy dress 18th birthday. Here's a few pics...
Me puppy sitting Lola a Jack Russel X Chihuahua
Ashley's movie-themed fancy dress 18th party- I went at Lara Croft
Saturday, 24 March 2012
Role reversal much!
The last few days have been.. different! On Thursday night it was Alex in a hospital bed and I was sitting by his side.
He played football for about an hour and half on thursday early evening and on the way home in the car he was complaining of a headache and feeling sick. I had no sympathy for him as I had been feeling sick all day due to my new IV's, Mereopenum, that the hospital had switched me to a few days earlier. Anyway, we were coming close to our home and he started to talk gobbledy-goop! I pulled up straight away and asked him what he said and he was mumbling a few random words so I suggested we go to A&E; to which Alex said 'no' and we went home. As we got out of the car, Alex was stumbling and unsteady on his feet. We reached the step up to our flat and the little kitty who visits us was sitting waiting for a stroke :) sadly, Alex fell off the step and landed on the cat! :( Then he lost his hand-eye co-ordination and couldn't put the key in the keyhole. By this time I was getting worried so I sat him down on the sofa and got him a drink. Al's face wasn't alert and he couldn't raise his arms and hold them there when I asked him to, so I rang NHS direct as I thought he could possibly be having a stroke. I would have rang 999 but I wasn't sure it was a stroke and didn't want to call out an ambulance if it wasn't necessary. While talking to NHS direct, Alex was violently sick and then went to bed and fiercely asked me to turn off all the lights in the flat- to which I thought he could have meningitis. So NHS direct put me straight through to the ambulance service and an ambulance came.
The ambulance staff told me they wanted to take Al to hospital so they started getting him into the ambulance. In the panic I was in, I accidently locked us out of the flat so rang my lovely landlord to ask him to meet my dad and let him into my flat to get my keys while I was with Alex. In the ambulance, Al was having moments of normality and moments where he couldn't remember anything- the day, the month, his name, my mobile number... It was worrying!
At the hospital he had bloodtests and a lot of his family and some of mine came up- was an excuse for a family gathering :P The bloods came back as normal so about 4 hours later, once he'd had some fluid and started talking normally again, the hospital discharged Alex. As soon as he was home, he threw up again though :/ His family aren't convinced he should be out of hospital so we are going for a brain scan on Monday as the way he was acting was sooooo strange!
Alex says that he thought he was saying the correct answers to the questions that the docs were asking him, but in fact, he was just saying numbers instead of words; this makes us wonder why his brain and mouth weren't working together? :S If anyone has any ideas about what it could have been, please let us know because we don't want him to be alone and it happen again and he doesn't know who he is or where he lives or anything!
Other than that drama, things seem to be going OK, I'm feeling better and we had a lovely day with my family today and saw my cousin's baby, Krillin :) Our flat is a bombsite at them moment though because of all the IV boxes and fridges taking up so much space :/ Hopefully not much longer till I'm off them and feel good again :D
That's all for now, lovessss xxx
He played football for about an hour and half on thursday early evening and on the way home in the car he was complaining of a headache and feeling sick. I had no sympathy for him as I had been feeling sick all day due to my new IV's, Mereopenum, that the hospital had switched me to a few days earlier. Anyway, we were coming close to our home and he started to talk gobbledy-goop! I pulled up straight away and asked him what he said and he was mumbling a few random words so I suggested we go to A&E; to which Alex said 'no' and we went home. As we got out of the car, Alex was stumbling and unsteady on his feet. We reached the step up to our flat and the little kitty who visits us was sitting waiting for a stroke :) sadly, Alex fell off the step and landed on the cat! :( Then he lost his hand-eye co-ordination and couldn't put the key in the keyhole. By this time I was getting worried so I sat him down on the sofa and got him a drink. Al's face wasn't alert and he couldn't raise his arms and hold them there when I asked him to, so I rang NHS direct as I thought he could possibly be having a stroke. I would have rang 999 but I wasn't sure it was a stroke and didn't want to call out an ambulance if it wasn't necessary. While talking to NHS direct, Alex was violently sick and then went to bed and fiercely asked me to turn off all the lights in the flat- to which I thought he could have meningitis. So NHS direct put me straight through to the ambulance service and an ambulance came.
The ambulance staff told me they wanted to take Al to hospital so they started getting him into the ambulance. In the panic I was in, I accidently locked us out of the flat so rang my lovely landlord to ask him to meet my dad and let him into my flat to get my keys while I was with Alex. In the ambulance, Al was having moments of normality and moments where he couldn't remember anything- the day, the month, his name, my mobile number... It was worrying!
At the hospital he had bloodtests and a lot of his family and some of mine came up- was an excuse for a family gathering :P The bloods came back as normal so about 4 hours later, once he'd had some fluid and started talking normally again, the hospital discharged Alex. As soon as he was home, he threw up again though :/ His family aren't convinced he should be out of hospital so we are going for a brain scan on Monday as the way he was acting was sooooo strange!
Alex says that he thought he was saying the correct answers to the questions that the docs were asking him, but in fact, he was just saying numbers instead of words; this makes us wonder why his brain and mouth weren't working together? :S If anyone has any ideas about what it could have been, please let us know because we don't want him to be alone and it happen again and he doesn't know who he is or where he lives or anything!
Other than that drama, things seem to be going OK, I'm feeling better and we had a lovely day with my family today and saw my cousin's baby, Krillin :) Our flat is a bombsite at them moment though because of all the IV boxes and fridges taking up so much space :/ Hopefully not much longer till I'm off them and feel good again :D
That's all for now, lovessss xxx
Friday, 16 March 2012
Go Aunty Debbie!
The last few days have been tough and sleepy. I have a hospital appointment on Monday to see if statistically I'm any better because my IV's aren't having much effect on me anymore and my cough is annoyingly still here. Due to that I've been very sleepy and want to stay in bed all day, but people to do, things to see! ;) <-- just kidding on that last part lol, me and alex have been going out 2 and half years today :D I don't usually remember each month but I always remember the half years because it means it is one of my oldest friend's birthday and (arguably more importantly) exactly 6 months till my birthday eeeeek!
Ooh exciting news for anyone who either has cf, enjoys fundraising, or knows my aunty... my aunty debbie is running the half marathon for CF for the 2nd year in a row! Don't know how she manages it, I can't even run for the bus :/ So proud of her though and I think she is so brave for even attempting such a distance! Her daughter (my cus) Jess is in Africa at the moment! She's volunteering at a children's centre place for children who may not have their parent's around to look after them anymore. We're all really proud of her too!
HAPPY BIRTHDAY LORNA! <3
Ooh exciting news for anyone who either has cf, enjoys fundraising, or knows my aunty... my aunty debbie is running the half marathon for CF for the 2nd year in a row! Don't know how she manages it, I can't even run for the bus :/ So proud of her though and I think she is so brave for even attempting such a distance! Her daughter (my cus) Jess is in Africa at the moment! She's volunteering at a children's centre place for children who may not have their parent's around to look after them anymore. We're all really proud of her too!
Here's a photo of me and my aunty Debbie
On the other side of my family, two of my younger cousins have now started the world of blogging too- so contagious lol! Anyway, that's about all for tonight, can't wait to go bed! :) xxx
Monday, 12 March 2012
Exams
Last week I got the results of my A level exams for health and social care and film studies. I didn't mention them before because I wasn't too impressed with them, but now that I've spoken to other people in my classes and my teachers, I feel better about them :D In health and social care, I got a C; not too great but seeing as no one in my class got above a C, I'm quite pleased! In film studies, I got a B which is good. Just gotta finish the coursework- lost the drive for it though because this is my third year so it's kind of dragging now! Had to re-take because last year I spent a lot of the school year in hospital.
Today I had to have another blood test to check my levels again. Instead of going all the way up to Fulham to have it done, I went to my Mama's doctor's surgery where she works :) I love going to her work because she likes to "show me off" to her collegues and I get lots of attention and feel famous for 5 mins hahaa :P On the weekend, the Pea came over to help me with housework while I've not got the energy. The flat has never looked so clean and tidy lol!
Tomorrow Ali Nave (Alex for those who can't understand my weird nicknames) has a day off- wooooo :D he's got a dentist appointment in the morning and then we're planning to go shopping :) not sure why, but I'm sure he has something expensive and pointless in mind to buy! Something I might buy is scales- ones that you stand on. I don't have any and I want to know if i've put on any weight (yn)
Today I had to have another blood test to check my levels again. Instead of going all the way up to Fulham to have it done, I went to my Mama's doctor's surgery where she works :) I love going to her work because she likes to "show me off" to her collegues and I get lots of attention and feel famous for 5 mins hahaa :P On the weekend, the Pea came over to help me with housework while I've not got the energy. The flat has never looked so clean and tidy lol!
Tomorrow Ali Nave (Alex for those who can't understand my weird nicknames) has a day off- wooooo :D he's got a dentist appointment in the morning and then we're planning to go shopping :) not sure why, but I'm sure he has something expensive and pointless in mind to buy! Something I might buy is scales- ones that you stand on. I don't have any and I want to know if i've put on any weight (yn)
Friday, 9 March 2012
IV update
Been on my IVs for 4 days now and feeling better already! :) been resting as much as I can and had a bloodtest to check my levels are ok and haven't heard back from the hosp so I'm guessing I'm gunna live! They have to check levels because with the drug I'm taking called Tobramisen, it can damage your liver or something if they give you the wrong dose, so they like to check every few days. Also, the bloodtest shows your CRP which is your infection level. Docs hope that after the course of IVs, your CRP lowers- but that's not always the case :/
Also, another sign that I'm getting better is that my appetite is coming back :D Today I had my normal brekkie, then at lunch I had fish fingers and waffles, followed by angel delight and for dinner I had angel delight again :P I LOVE angel delight and it's got lots of fat in which is great! My secret recipe is to mix it up then straight away pour chocolate sauce on it- this will sink to the bottom because the angel delight isn't set. Then once it's set, I put more chocolate sauce on and a variety of sprinkles! YUM. It's really just a sugar-fest lol! However, as per usual, I made a mess :/ I don't know how I manage it but I always spill food down my clothes or on the furniture or knock over my drink :/ I decided long ago that I would wear a bib at my wedding- don't wanna risk it!
Resting gets boring so made a 'J' :D
mmm dinner <3
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